Makes me mad!

It’s been a while dear reader… There have been so many stories percolating in my brain these past few months but I’ve not had the energy to put pen to paper (or more aptly fingertips to keyboard). Doctors appointments, kindergarten research, the worst bout of insomnia she’s had yet topped with coxsackie – there’s been a lot going on. Thankfully there’s been a lot of awesome and amazing stuff happening too. We went on a speedboat while visiting our family in Florida for the holidays which Lily LOVED. She is turning 5 on Monday. Also, Lily is getting really good at using her Tobii and there’s just one story that I have to share…

This happened one night when our dear friend Carlos was visiting in December. Lily and I were playing the sleep ‘game’. It goes something like this: after we go through our evening routine, I put her down in bed, tuck her in and say goodnight while shutting the door. Two minutes later, she jumps out of bed and knocks on the door. I go in and put her back down telling her it’s sleep time. Shut the door. She jumps out, knock-knock. And so forth.

Sometimes she’s fast and escapes from the room before I can put her back in bed. Kid runs into living room. Goes over to the computer and gently puts her hand on it (which means ‘Mommy! I want to listen to music!). I tell her, ‘Lily, Mommy said it’s time for bed so no music.’

She doesn’t like that answer so she runs into the playroom (which means, ‘Mommy! I want to watch a movie!). I tell her, ‘Lily, Mommy said it’s time for bed so no movie and no music.’

She doesn’t like that answer either so she runs over to the Tobii which is perched on a chair in the living room. Using the Tobii she says/navigates, ‘I have an idea! TV/DVD show!’ I tell her, ‘Lily, Mommy said it’s time for bed so no TV, no movie and no music.’

She then finds a button on the Tobii (one that I had never seen before) and says, ‘Makes me mad!’

And that my friends, is my almost 5 year old acting her age. I am one proud momma.

Speech-generating button on the Tobii that Lily uses somewhat frequently these days when she’s upset with Mommy!

> mommabear0208 posted: ” It’s been a while dear reader… There have been > so many stories percolating in my brain these past few months but I’ve not > had the energy to put pen to paper (or more aptly fingertips to keyboard). > Doctors appointments, kindergarten research, the wor” >

About me

A busy mom living in Manhattan, working full time in a job that I love and raising my sweet little L - the sweetest, prettiest, funniest, hardest working, smartest, bravest 6 year old out there, who happens to have a genetic disorder called Rett Syndrome.
This site is for family and friends to follow us on our journey of health, happiness and the occasional hospital visit.